Life after tongue cancer: 25-year-old poised to help others recover
Sometimes maturity, strength and grace take place in youth, forged from adversity.
Oral, Head & Neck Cancer Awareness Week
Local eventsToday, Wednesday: School talks across Charleston County. Local professionals will speak with sixth- through eighth-graders about how tobacco and alcohol can cause head and neck cancers.Friday: Free oral cancer screenings offered 9 a.m.-2 p.m. in Dr. Betsy Davis’ clinic on the 10th floor of Rutledge Tower at the Medical University of South Carolina. Contact Ann Durgun at email@example.com or 792-6624.How widespread is oral, head and neck cancer?With 50,000 cases diagnosed and more than 12,000 deaths annually, these cancers are the sixth-most-common form of cancer in the United States.What is included in head and neck cancer?Head and neck cancers include cancers of mouth, throat, voice box, skin, sinuses, saliva glands and thyroid gland.Research has shown that many people do not understand where these cancers are, what causes them and how they are diagnosed. In fact, there may be a lack of knowledge among health care professionals, including physicians and dentists, about this disease.Early warning signsWhile oral cancers often start without an early indication, some of the signs include the following:Persistent pain in your mouth.White or red patches inside your mouth or on the tongue.Thickening of the cheek.Difficulty chewing or swallowing or moving your tongue.Difficulty moving your jaw, or swelling or pain in your jaw.Soreness in your throat or feeling that something is caught in your throat.Pain around your teeth, or loosening of your teeth.Numbness of your tongue or elsewhere in your mouth.A lump in your neck.Loose dentures or change in fitting of dentures.Bad breath.Does smoking cause head and neck cancer?Tobacco, including “smokeless tobacco,” and alcohol use are the most important risk factors for head and neck cancers, particularly those of the tongue, mouth, throat and voice box. Eighty-five percent of head and neck cancers are linked to tobacco use. People who use both tobacco and alcohol are at greater risk for developing these can- cers than people who use either tobacco or alcohol alone. Is there a link between oral sex and head and neck cancer?Over the past decade, an increasing number of young nonsmokers has developed mouth and throat cancer associated with the human-papillomavirus, or HPV. Today, 25 percent, 10,000 cases each year, might be attributable to a strain of HPV. Physicians and researchers believe this might be due to an increase in oral sex as part of early sexual experiences.Sources: www.headandneck.org, Head & Neck Cancer Alliance, American Cancer Society, National Cancer Institute, Medical University of South Carolina.
Aliyah Howard was 24 and in the final semester of her studies for a master’s degree in speech language pathology when in February 2012 she noticed she had difficulty swallowing. Shortly thereafter, she felt pain around her ears, then noticed swollen lymph nodes and a mass on her tongue that was growing quickly.
Howard of Columbia went to her family doctor, who referred her to a specialist at the Medical University of South Carolina. The news was not good.
Not only did she have oral cancer, but it was stage 4 and moving fast.
Dr. Terry Day, director of MUSC’s division of head and neck oncologic surgery, recalls the cancer was so aggressive that it had to first be stopped before the mass was removed.
Chemotherapy shrunk it and kept the cancer from getting in her bloodstream, but it had spread through her tongue.
As a result, her tongue had to be removed last June in a surgery technically called a “total glossectomy.”
Using tissue from Howard’s back, Dr. Judith Skoner reconstructed a tongue, but the recovery and rehabilitation to restore Howard’s ability to talk and swallow was going to be challenging.
Howard wouldn’t leave the hospital until October. All her plans for life had to be put on hold.
Howard was not a smoker, a major risk factor for head and neck cancers. She tested negative for the human papilloma virus, or HPV, a rising risk factor for young people. And she did not have a family history.
Day says Howard is among the 15 percent of the population with head, neck or oral cancer with no known cause.
Upon months of reflection, however, Howard is philosophical about her fairly unique challenge.
“This is no coincidence,” she says, in speech that initially is difficult to understand.
“This was meant to happen to me, so that I can help my patients in a way that I wouldn’t have been able to beforehand. It’s one thing to have empathy and sympathy for someone, but unless it happens to you, it’s a big eye opener.
“But I won’t lie to you, it also has not been easy. I cannot feel sorry for myself every day because then I’ll just become a pitiful person. I have to keep moving the best that I can.”
Howard still is recovering and misses many parts of her life that existed prior to cancer.
“The saddest part for me is that I can no longer enjoy a standard meal,” says Howard, who still has a feeding tube but can manage to eat soft foods, such as oatmeal, rice, mashed potatoes, and macaroni and cheese.
And it’s not just the food she misses, it’s the social aspects of sharing a meal with family and friends.
“Eating is social. I think people don’t realize how social it is. I think eventually I’ll get back to it.”
She hopes that an oral prosthesis, which she plans to get this summer, will make it easier for her to swallow and talk. The device lowers the roof of the mouth.
Howard has asked her mother to hold off throwing a graduation party for her until after she gets the prosthesis. She plans to graduate from S.C. State University in May.
Since the cancer, Howard also says she’s gone from someone who was always going out to being a “home body.”
Also prior to her cancer, she had been dating a man for about a year. She broke it off. He has asked to see her, but she’s not ready now. Eventually she will.
“Everything’s slowly getting back to normal,” she says.
Howard says her recovery was possible because of her family, especially her parents, James and Tunisiann Howard.
“I had a tremendous support system. If I had to deal with this without support, I don’t know how I’d do it,” she says.
Considering her degree and personal experience, she is poised to help others facing a similar loss for decades to come, starting this week with visits to local schools as part of Oral Head & Neck Cancer Awareness Week.
“She will have a unique perspective,” says Julie Blair, a speech language pathologist at the MUSC Evelyn Trammell Institute for Voice & Swallowing and the VA hospital.
“Patients ask what am I going to do now. The answer is different for every patient. When we talk to patients about their treatment, we give best case, worst case. Best case is Aliyah. She is our goal for functional outcome.
“As a clinician, it’s so rewarding to see her making the progress she’s made and using herself as an example for others, which I think is the silver lining to all of this for her,” says Blair.
Coming from a professional, Blair says giving information on surgery and recovery can seem vague and surreal to patients.
“Whereas I think Aliyah, when she talks to patients, she’s coming at it from the perspective of, ‘I’ve been in that chair and heard these words. I have felt what you’re feeling. Yes, it’s awful, but you can move on and reach goals and continue with your life. It’s just different. There’s a new normal that you have to find.’ ”